stuck in a flare

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uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/9/2007 7:17 AM (GMT -7)   
Hi, I am a new member, I have pancolitis for about 13 years now. I had a baby 11 months ago and I have been stuck in a flare since the beginning of the pregnancy. I do lots of alternative stuff, I do not get much relief from asacol or colazel. Prednisone helps, but I have taken it almost nonstop for this whole time.  have ore bleeding and mucos than D.
Has anyone out ther had any real relief from anything? I am also always affected by season change, anyone else.
I just started accupuncture, worth a try?
I have a big fear of colonoscopies.
Help.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/9/2007 7:54 AM (GMT -7)   
Check out Jini Patel Thompson's Listen to Your Gut for a variety of non-standard treatment options, including dietary modifications specifically to address bleeding. Also, it would help us give you better advice if you were specific about the "lots of alternative stuff" you take.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 464
   Posted 11/9/2007 9:43 AM (GMT -7)   

uctoolong - Sorry to hear about your long flare.  I know exactly how you feel, I have been flaring for 3 years now!

Have you considered going onto an immuno-supressant?  I am on azathioprine.  While it has not put me into remission this time (It did the first time I used it) it definately helps.  Aloeelite is also a godsend.

Take care


Back on Pred - 8mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
VSL #3 with Activia Yoghurt
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
Prograf Tacrolimus 4mg
 


uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/9/2007 10:07 AM (GMT -7)   
Thanks for the reply, I have been afraid of the immunosuppressants. I always thought it made more sense to fix my immune system than suppress it.
For years I was able to do very well by using Culturelle, fish oil and psyllium. I also have had good luck with strict diet of only steamed vegetable and fruits with small amounts of fish and chicken. No grain. It is a little tough to stick to but works much of the time.
Everything has changed for me since the birth of my son. Maybe the sleep depravation keeps me from controlling things!
I will post if I have luck with the accupuncture
Thanks again 

uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/9/2007 10:14 AM (GMT -7)   

Thanks Princea,

I have taken bromelain, tumeric, psyllium, fish oil and various probiotics.

I will check out your suggestion. Thanks, I am openminded, I have not seemed to realize much real help from conventional medicine. I am an x medical representative. I have a little distrust of pharmaceutical companies!


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/9/2007 11:01 AM (GMT -7)   
If you are open to trying other things, I will tell you some things I have used successfully. Maybe you've already tried them. Capsicum (cayene pepper) can stop bleeding. Liquid chlorophyll will stop bleeding and raise your blood count. Also aloe vera juice taken several times a day can stop a flare up. Hope this helps. Best wishes to you!

uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/9/2007 2:09 PM (GMT -7)   
Thanks, I am open to alll ideas, it seems that the people that feel better go outside of conventional medicine. I have not tried either of those things, I will give it a whirl..
How long have you had it? Do you take conventional drugs also?

candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/9/2007 3:24 PM (GMT -7)   
I've had UP for 17 years. I tried the steroids at the very beginning-I was only 15 and scared. I only used them for a couple of months and did not do well. All the years since then, I have been self-treating. There are herbs that I take every flare-up and I feel this helps me better than any drug could. Sometimes I go a year or two without a flare-up.

uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/9/2007 5:07 PM (GMT -7)   
Thanks, What are the herbs? I am willing to consider new things,do you do any dietary restrictions?

candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/9/2007 7:49 PM (GMT -7)   
The ones I use most often are made by Nature's Sunshine and they are combination formulas, consisting of several herbs. First is Intestinal Soothe and Build which does just as its name says-soothes and builds. I also use CLT-X which is a Bowel Spasm Formula. And I-X is good for building the blood. I do drink Nature's Sunshine aloe vera mixed with Aloe Life cherry berry. Makes it taste much better.

I always take calcium with Vitamin D. The colon really needs calcium and even doctors are realizing now that Vitamin D cuts the risk of colon cancer by 50%.

I am always anemic, so for the bleeding, I take capsicum and I drink Nature's Sunshine brand chlorophyll.

If you're in to essential oils, lavender oil rubbed on the abdomen eases pain, and lemon oil rubbed on the lower back can ease constipation.

When I have severe D., I take Esdifan, which is all natural and contains zeolite, and it stops it fast.
You could google any of these to learn more about them, or go to your local herb store and I'm sure they will give you very helpful advice. That's what I do when I need help.

candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/9/2007 7:52 PM (GMT -7)   
Oh, and I can't eat veggies, fruits, dairy, grains, nuts, popcorn, & spicy stuff.

uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/9/2007 8:10 PM (GMT -7)   
wow, what do you eat? I was reading about the specific carbohdrate diet, have you ever looked at that? What about alcohol? DOes that bother you? I think red wine is ver bad for me, also any red juices.

candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/9/2007 8:23 PM (GMT -7)   
I don't eat much. I should be real skinny -HA! I haven't really read about the specific carbohydrate diet, but I've been doing my version of low carb for about 9 years. I've never tried red wine. I definitely can't drink alcohol, coffee, juices or anything carbonated. I can only drink water and tea. I drank a couple of those energy drinks a couple of weeks ago and that's why I'm sick right now. Maybe they have too much caffeine??? Don't know for sure what' offensive in them.

uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/10/2007 6:59 AM (GMT -7)   
the specific carbohydrate diet is designed for people with UC , IBD ect. There are many websites about it. I found it on about.com

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/10/2007 12:51 PM (GMT -7)   
Hi..welcome to the forum...

Have you not tried any rectal med preparations?

Try not to assume that people who don't use meds are better off or doing better.

I think that because you've been on prednisone, your body is just used to having it. As well, there are so many hormonal fluctuations after pregnancy.

Are you still breastfeeding?

Are you married? If yes..is your husband supportive of you regarding your health and sharing responsibilities with house/baby?

I think accupuncture will be of help to you on a lot of aspects...but it's not a treatment for UC.

I don't think you've exhausted the 5ASA first-line meds as of yet...mainly the rectal meds.

I think as well you need to increase your protein intake. More fruits and veggies will increase the symptoms of diarrhea/discomfort/frequency...that would be food related, not UC related, however.

The SCD is fairly restrictive, but it's very balanced regarding proteins...which you really, really need.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/10/2007 6:26 PM (GMT -7)   
Thank you for your input, I do try some of the rectal meds, but I also have pancolitis. You are right , they do help. I am just concerned about the almost continuous pred. that I have been on since the second trimester. I have not been on super high dose, just unable to kick it for long.Prior to pregnancy, I was taking dhea(my level was very low). Believe it or not it really helped,my energy was great and I was not on meds. One side effect is increased fertility! Asacol seems to make me worse, and makes my joints ache.
NOt breastfeeding any more, he is almost 1. He was premature and I had a c-sec. Gyo. gave me IV antiinflammatory post op, very bad idea. All in all, a very stressful winter. No sleep until recently.

You are correct, accupuncture is helping with other things, (sinus) and it really makes your body relaxed from the inside. My accupuncturist is very sure that she can help. She has many years of experience and claims to have helped others. I am going to give it a chance.

Do you notice season change, especially fall, causing a flare?

Did you ever hear of David Klein Self Healing Colitis and Crohns?

This is the first time I have oined a forum, nice to hear from others with this same disorder.
And yes married, husband is supportave but unavailable most of the time, he works way too many hours.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/11/2007 12:35 PM (GMT -7)   
Hi..What rectal meds have you been using? Even though you have pancolitis, the rectum will ALWAYS be inflamed...and in pancolitis, it's sometimes the area that can be inflamed much worse than anywhere else. Remember too, that everything is controlled by the rectum...urgency, frequency, control..etc. If that area is super inflamed, it signals that it needs to hurry things along to get them out quickly...it's like a defensive mechanism so that it doesn't have to work too hard, but it's a bittersweet result with added inflammation, raw anal tissue, sometimes external hemorrhoids, fissures and even yeast infection. So, use them if they help....are you on prednisone at this time? What dosage?

Seasonally, fall is my fave time of the year, but in the past it was the time that I started new courses, extended my schedule, had more commitments and got sick....so, I would say that sometimes it followed that way. But since I'm not starting any courses or have had extended schedules, I'm fine. It more seems to depend on what's going on in my life rather than the season itself.
But in saying that...the change of seasons do cause me some stress....depending on my needs or events. Spring is the most stressful for me...but I seem to be the most busy then. I can't say seasonal as a for sure....but many do if there are allergies involved or illness that do bring on extra stress to the body and emotional state.

I don't follow any specified diets. I did check out David Klein's site. What is it that you're attracted to? What do you believe that what you're doing will cause you more harm than good?

I think initially, that we need to eat as well-balanced as possible in a way that can fit into our lifestyle and schedule. How does your husband eat? Is he a vegetarian? Is he willing to follow a diet you're wanting to follow? How about your child....how are you feeding him/her?

Look at the big picture....I think you can do it without too much extremes. I'm a meat eater and would not be able to sustain myself without a higher protein intake.

I've not heard of many using David Klein's name on here...but do put out another thread enquiring. Some members don't read all threads...so, it'll be good for you to get a varied opinion base. You might even want to put out a question about what diets others follow..etc.

You mentioned you are afraid of c-scopes...when was your last one? Do you have a GI that you trust....maybe it's time for a change?

Hang tough....it takes a while to get it all figured out in how to live with chronic disease while trying to function day to day.

It's great you found this forum....there are may moms that will be able to offer a lot of insight. I have no children...I do know I wouldn't have been able to cope so well while flaring...although having the doc I do would have been a good thing.

Use common sense....try not to be desperate. Not all things are good for us even though they are touted as a cure.
 
Make sure you're getting enough supplements...multi vitamin, multi B vitamins, calcium/mag/D, zinc, etc....a good probiotic..and some use l-glutamine.  I haven' t added that yet..but am looking into it.


quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 11/11/2007 12:42:09 PM (GMT-7)


uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/11/2007 12:55 PM (GMT -7)   
I am using canasa supp. and I am on prednisone 40mg for about a week now, I will try to taper soon. I am able to get down to 5 or 10 mg, but then invariably, I have to go back up. I am just stuck since I had my beautiful kid. I don't think I could be completely vegetarian. I actually crave protein more than other things, I eat fish and chicken and sometimes turkey. I have followed Kleins advice in the past,, juicing and using steamed mild vegiges and fruits when in a bad flare, it really does help, I do not tolerate breads and grains well, I can tell the difference from a couple of meals that are too carb heavy.
I am realy hoping that now I can get a new start. Relax more, sleep is a big factor for me.
I am taking omega 3, probiotics, folic acid, vit D, biotin, bromelain(REALLY HELPS SINUS!),and melatonin.
I am sorry to say that I have not had a scope in a few years, I just now am feeling like I might be able to face it.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/11/2007 1:26 PM (GMT -7)   
Hey, it takes time for us to find the balance...we really all seek that no matter what situation/health issues..etc. If you're up for the scope...make the appointment anyway after you're off the pred.

You need protein.

Are you seeing a Chinese accupuncturist?

I would suggest you maybe step up a notch to using the Rowasa retention enemas instead of the Canasa...or....you can inrease the Canasa to at least twice daily. Better with the Rowasa, however

Hope you'll be able to get off the pred soon.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


uctoolong
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/11/2007 4:34 PM (GMT -7)   
It is kind of you to pend time writing to others when I know you probably have your own issues to deal with.

If you have asthma, you might check out the new research with bromelain. I forget which one but there is a large study underway at a university right now. I have seen a huge improvement in my sinus with it. It has to be taken on an empty stomach to see the result.

I told you the wrong med, it is colazel, not canasa.

My accupunturist is not chinese herself, she has had about 12 years of internships and started out in conventional medicine.She said that there are 2 forms of accupuncture and she practices the one that we are less familiar with. She is the first person that seems to be confident that she can help me. I think I am going to give her a chance.

What about aloe amp? Seems that many people claim relief from that.

Do you follow any dietary restrictions? Other than the obvious no raw veggies ect?

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/11/2007 5:20 PM (GMT -7)   
No diet restrictions because I KNOW food doesn't cause flares.
I have never taken aloe AMP...but a few have taken it with varied results.

I don't have much sinus trouble, although when I get a cold, I've sometimes ended up with an infection. It states that bromelain can reduce the thickness of mucus....during a cold I can see that it could help...I have a friend who takes pineapple when she gets a cold.
My asthma is both intrinsic and extrinsic.....no excessive mucus at all, and I use my preventer to keep all nicely quiet.
Thanks for the suggestions, however....I'll keep it in mind, maybe even give it a try...as well, I'll suggest it to my friend who has sinus trouble from allergies and getting her kids' colds. ugh!

It also does also say that bromelain contains sulphur..interesting...I can see how it'd help with joint and body aches/pains. Something else to consider.

I'll check out the study you're talking about.

You should be on rectal meds as well.....at least consider...because if you give it a little boost to help get the inflammation under control....your other treatments may just work that much better.

Keep us posted as to how you're doing.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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